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    Old 07-30-2004, 02:06 PM   #1
    Neshik
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    Smile Trileptal anyone?

    Hi, I was wondering if enyone is taking Trileptal?
    What are your side effects? (if any...)

     
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    Old 08-02-2004, 09:18 PM   #2
    debvid
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    Re: Trileptal anyone?

    Hi

    My daughter is 14 and has been on trileptal since last Aug. She is being weaned off now. When she has been taken off before her seizures got worse. We are doing it slower this time. She is being switched to lamictal.

    She has bad side effects. She was suicidal at times, grades were affected, mean, sleepy, defiant, very blurry vision (could barely see), cognitive slills, etc. She had her first GM's when she was taken off quickly for a veeg.

    She is so much better as soon as we start tapering her off.

    I've put a post on here before for anyone who has taken trileptal. I didn't get any response. I guess that many aren't on trileptal that post here or they don't have the problems we have.

    Are you having any side effects?

    Hope this helps you some.

    Debbie

     
    Old 08-04-2004, 02:08 PM   #3
    puppy love
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    Re: Trileptal anyone?

    Hey I have been on trileptal for about 3 years now. I have not had any problems with it. It is the best that I have been on so far. I gained weight when I took Depakote and then they put me on Topamax which had a diaretic in it and I had to use the restroom a million times a day.

     
    Old 08-05-2004, 04:07 PM   #4
    Neshik
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    Re: Trileptal anyone?

    Hi Debbie
    Thanks for the reply, I hope your daughter will do better on Lamictal
    I was thinking of asking my doc. About it myself.
    My side effects are: blurry vision, lose of balance (Iím a dance instructorÖ) I forget
    Things and in conversation, canít seem to find the right words.
    Iím starting a new job in sep. and I donít know if starting a new medication now will
    Be the right thing to do.
    I would love to hear how your daughter is doing on Lamictal, wish you
    Both the best.
    Sarit.

     
    Old 08-06-2004, 02:16 AM   #5
    Hydroxpl
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    Re: Trileptal anyone?

    Hi, I am on trileptal. I am 18 years old male. My physician told me that in terms of side effects, this should be the best medicine out there. He says there should be minimal or no side effects at all. He also told me that this is the least harmful medicine to your body. I don't think there are any side effects on me as of yet. I've been extremely temperamental recently, but I've always been temperamental... so I don't really know what to make of that. So ya.. as far as i know this is the best medicine out there right now.. gluck!

     
    Old 08-07-2004, 01:59 PM   #6
    debvid
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    Re: Trileptal anyone?

    Hi Sarit

    Bonnie is still doing soooo much better as we taper her off the trileptal. She got a rash a week ago and we didn't know if it was the lamictal or a suntan spray ( she had her body sprayed by someone). We had to delay increasing the lamictal by a week just in case it was the lamictal. As it turns out it must have been the spray because it is gone. We should start increasing it again tomorrow.

    Bonnie tumbles, she's a cheerleader, her tumbling is so much better now. She just about has a full now ( a twist in the air). She had problems with vocabulary.

    I'm a little nervous changing the med right now, she starts high school Monday. If we hadn't had the delay the timing would be a little better. Since we are lowering the trileptal she has stopped having seizures! She had one the day she was sprayed (7/29) one the next day and two the following, none since then. She started tapering off on 7/9 and that's the only seizures she has had since then. They may be related to the spray, I don't know. Before she was having 3 - 6 a day, maybe more!

    It may be that the higher doses of trileptal make her have seizures, and the smaller doses help her. I really don't know. As the other post said, he is more temperamental, Bonnie is VERY temperamental on the trileptal. There is a huge difference in her on it. I am getting the old Bonnie back as we are getting off trileptal. When Bonnie read your post she said "That's me!". We were told about it having the least side effects also. Since then her doc has said she has another patient on trileptal that is having cognitive issues also.

    I will keep you posted as we increase the lamictal and lower the trileptal. So far so good. I hate to be so down on trileptal, we have just had such a bad experience with it, for others it may be great.

    Good luck with your new job.

    Debbie

     
    Old 08-08-2004, 09:42 PM   #7
    Jhogan928
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    Re: Trileptal anyone?

    I have been taking trileptal for 3 and a half months and i still feel side effects from it. i got a grand mal on may 1st, the first time i ever had a seizure. I dont have Epelepsy, and i havent had any seizures since then. i think the meds work well, but im still not use to the side effects. I constantly have headaches mostly every day. im constanly sleepy, i cant give conversations without stopping in teh middle of them and not remembering what i was talking about. its been three months since my siezures so i can drive again, but those 3 months away from driving makes me now not want to drive again.

    but 3 months later im still getting side effects such as sleepiness during the day, headaches, and anxiety. but i feel the anxiety is not from the meds. i constantly think that when the Dr. told me that if i take this medicine, i wont get any. he said that to me, but i have to keep sticking to his word, because since then i havent had any.

    anyone else have the same problems, or is it jsut me??


    -john

     
    Old 08-08-2004, 09:43 PM   #8
    Jhogan928
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    Re: Trileptal anyone?

    the dr. has me on 1200 mg of trileptal a day, is that the reason why im getting all these side effects like sleepiness and no motivation to do anythign during the day.


    -john

     
    Old 08-10-2004, 11:10 AM   #9
    adorableinam
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    Re: Trileptal anyone?

    I am a 47 yr old woman, had my first seizure a year ago with no known origin. I was started on trileptal about 9 mos ago and it's the only medication they have tried with me. I experience bad vision, memory loss (the same as indicated by others.....the great memory I always had is gone....strangely enough, it's harder to remember recent things than things of long ago), spells of immediate weakness, dizziness for no reason, severe headaches that I never had. I was told the same thing as the rest of you....supposed to be the best med for seizures now, less side effects and easier on your body. Since starting on it, I had never had a seizure where I lost consciousness until a week ago and then it happenned three times within 24 hrs. I have to admit, I was extremely upset and depressed about it.....I had finally come to grips with the fact that medication wasn't going to stop everything that can happpen and that I would have to live with side effects from medication.....but, we thought the larger seizures were under control with the trileptal. Obvioiusly not....hard for me to swallow that. I am being referred to an epilogist (anyone have any experience with one??) for more testing now. If they do not find a cause then, I am being sent to Mayo Clinic for more review. Does it ever end???? The seizures that I have are supposedly located in all parts of my brain, not exclusively epileptic seizures, and they have not been able to find a real diagnosis. This is my first time to visit a site to "discuss" my feelings about it and get others advice or support...hope I didn't overdose anyone, but I would appreciate anyone's feedback. Thanks....Kyle

     
    Old 08-18-2004, 03:58 PM   #10
    debvid
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    Re: Trileptal anyone?

    Hi Sarit

    Just an update. Bonnie is still doing pretty good with lowering the trileptal and increasing the lamictal. She now takes 1/2 of a 300mg trileptal in the morning and 1 (whole one) at night, along with 1 25mg lamictal in morn and 1 at night. She had 1 small s 2 days ago and the feeling of having one yesterday but didn't have one. We are scheduled to decrease and increase next week.

    So far her side effects are much less than before ( knock on wood).
    How are yours doing?

    Best of luck on your new job.

    Debbie

     
    Old 08-18-2004, 04:04 PM   #11
    debvid
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    Re: Trileptal anyone?

    Hi Kyle

    When you lost consciousness had you changed the dosage of trileptal or missed any doses? When Bonnie had her GM"s it was always when she was being taken off trileptal( too quickley, I think).

    It is good you are going to an epitologist, they should be able to give you some answers.

    Best of luck

    debbie

     
    Old 08-18-2004, 10:29 PM   #12
    adorableinam
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    Re: Trileptal anyone?

    Debbie,

    Thanks for your message! They have never tried taking me off trileptal, so there didn't seem to me to be a reason for the seizures (although I probably won't ever think there's a GOOD reason for a seizure, will I? LOL). I found out today about the video EEG procedure.....boy, it wasn't what I had anticipated. I guess that is what the epitologist is going to do. Has anyone had one of those and is it as scary as it sounds to me? I know you are in the hospital when it is done, but 3-5 days of them taking you off your medication so you will seizure and they can video you sounds like something that will cause me alot of anxiety, fear, insecurity, etc......scary for me. So, if anyone can shed some light on their own experience, it will be greatly appreciated. And, I assume you have to begin taking it again and go through the build up again.

    I'm glad Bonnie is doing better at the moment. Since I"m new here, is she your daughter and how old is she? I had stayed away from chat rooms, forums, etc. regarding my condition as it made it a "bit more real to me" to talk with others and I kept hoping they were going to find the origin of mine and stop them. That was what they said they were trying to do in the first place......no such luck so far. Now, I find that I need the support of others....and I'm glad I found this site. So, thanks again for your message.....it's kinda like hand holding here, isn't it??

    Kyle

     
    Old 08-26-2004, 05:27 PM   #13
    puppers
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    Re: Trileptal anyone?

    Dear Kyle,
    I take Klonopin for my seizures. It is the medicine for the LEAST amount of side effects. They had me on all the others and I had side effects. The only problem with Klonopin is that it has DERIVATIVES (not truly) of Librium, Valium in it and the seizure medication. They tried to put me on the GENERIC KLONOPIN, but it didn't work because it was missing the ACTIVE SEIZURE INGREDIENT IN IT SO THEY COULD SELL IT CHEAPER.
    I ONLY take trileptol when I have something called "breakthrough seizures" where many of them will occur at a period of minutes to hours. The trileptol interrupts the electrical impulse in the brain. I don't care for the trileptol because it gets me tired, sluggish, poor eyesight, poor memory, but it does help. Doctor informed me to take 1/2 tab of 150 milligrams two times a day for two days when the breakthrough seizuring occurs and THEN STOP THE TRILEPTOL. it has helped to do this, but see your doctor first and ask him/her about it.
    Hope this helps. If I take more than two days worth of Trileptol, I get very ill with high fevers and swollen glands in the neck. It is a form of Tegretol that they have developed and call it Trileptol now.
    Puppers

     
    Old 08-29-2004, 08:34 PM   #14
    adorableinam
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    Re: Trileptal anyone?

    Puppers,

    Thanks for the info!! I am going to ask my doctor about taking the Trileptal for the breakthrough seizures, for sure. I have been referred to Mayo Clinic and will be going there in October, as the doctors can't seem to figure out the origin of my seizures nor why the trileptal dosages are not stopping the large seizures. I keep telling myself that I should just accept that I have seizures, take my medication and shut up about it, but when the medication has side effects that I hate AND it doesn't take care of the seizures when I actually black out.....that's when I cannot just accept it. I hope I will get some answers when I am at Mayo as it seems to be the most knowledgable place to go, at this point. It's funny that you mentioned how and when you are taking trileptal.....my doctor told me that I would have to take 10 days worth of a different medication when I quit taking the trileptal as kind of a "coming down" medication from the trileptal. Have you ever heard anything like that? Kinda like a transition drug, or something. I read and read on the internet about medications for seizures, I ask the pharmacist also, and I still hear different things from everyone...it's mind boggling, isn't it??

    Anyway, thank you so much for your input! It helps, really.

    Kyle

     
    Old 09-01-2004, 03:23 PM   #15
    law202
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    Re: Trileptal anyone?

    My daughter is 17 and has been on Trileptal for three years. She has a diagnosis of seizure disorder following an episode three years ago and then what the EEG showed. She takes 300 mg. a.m. and 450 p.m. and has had virtually no problems. (She does get headaches sometimes, but the doctor doesn't think that is related.)

    She has not had any more seizures, so she had a follow-up EEG done recently with the same results. So the seizure disorder diagnosis continues, and she will continue hopefully successfully on Trileptal. I do hate the idea of any kind of long-term medication, but........

    I had been wondering about other folks who have been taking it for a while. Please post if you have!!!
    Chris

     
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